"Side Effects of Breast Cancer Treatments Not Properly Recorded" SOURCE: CRC Press LONDON, ENGLAND -- August 13, 2001 -- The side effects of breast cancer treatments are not being properly recorded, say researchers from The Cancer Research Campaign, and experts are asking how patients can make an informed decision about their treatment if they don't know the full effects it can have. Hormonal therapies, like tamoxifen and goserelin (Zoladex), tend to be viewed as a gentler option for patients. But a new study in Breast Cancer Research and Treatment (66:73-81, 2001) has exposed a wide variation in the numbers of women who experience side effects, and the kinds of symptoms they have. The team of researchers carried out an investigation as part of a wider study of tamoxifen and goserelin as adjuvant treatments for breast cancer. They interviewed 75 breast cancer patients taking one or both treatments, and compared the symptoms they reported with those recorded in their medical notes. "The results were striking," says Professor Lesley Fallowfield of the Royal Free and University College Medical School, one of the lead researchers. "We found that the symptoms in the medical notes often varied considerably from those described by the patients. Eighty-nine percent of women had some kind of side effect recorded in their medical notes. But 99 percent of women told us in interviews that they'd experienced symptoms as a result of therapy." "Clearly some side effects are being overlooked. And that could well be because our over-stretched cancer doctors simply don't have the time to spend listening to their patients about how they are feeling," added Dr. Fallowfield. There was a significant difference between the frequency of self-reported and clinician-recorded symptoms. A massive 91 percent of women believed their treatment caused hot flushes, but only 47 percent of medical records noted this. Eighty percent of women said they gained weight, but this was only listed in 21 percent of the medical notes. A literature review of published side effects backed up the group's findings. Studies tended to focus on specific and uncommon symptoms experienced by individual women, rather than detailing all the side effects for a wider group. At the same time, the severity of the symptom was often ignored completely. Dr. Fallowfield thinks that part of the problem could be attributed to terminology. "Some patients don't have a clear idea of what counts as a side effect," she says. "In at least one case the interviewee told us she hadn't had any side effects, but when we showed her a list of common symptoms she found she'd had several of them. And while a patient might say that she felt 'weepy' or 'irritable', a doctor would probably describe this as 'anxiety' or 'depression'. It can lead to confusion." "We also think that with rarer side effects, like vaginal dryness or loss of libido, there is an element of self-fulfilling prophecy. Clinicians are less likely to enquire about less common symptoms, and patients only mention them if asked. The side effects appear to be rarer than they are. We need to train our doctors in communication skills, and make sure that cancer patients aren't suffering in silence," Dr. Fallowfield concludes. According to Jean King, The Cancer Research Campaign's Director of Education Funding, "Worldwide, hundreds of thousands of women are prescribed hormone therapies for breast cancer every year. So it's extremely important that doctors and patients have a clear and comprehensive profile of the side effects. This study's findings have implications for the treatment of all cancers. It's vital that side effects of all drug therapies are accurately monitored. Otherwise, how can we compare new drugs in clinical trials with existing treatments? And how can a cancer patient make an informed choice about which treatment is best for them?" ====================================================================== Breast Cancer News is brought to you by the The MID HUDSON OPTIONS PROJECT, INC a grassroots Breast Cancer Health Advocacy, Support and Activist Group. The information is intended for educational purposes only, in order to help you make informed health choices and may not have been touched upon by your doctors. We are not doctors and we do not recommend any particular treatments. We are sending this information to advise you of the complete scientific overview that is currently available, although we may not necessarily endorse it. Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.